Life Hands you Lemons

I'm having a bad week.

First, some a quick update on things: I saw the Throat Doctor today.  He tortured me with a camera up my nose and then all the way down my throat.  My throat hasn't really opened up any more since December.  The good news is that he is conveniently available on July 26th so he'll be able to get in on the surgery party.

But, my week? It's been bad.

When they stuck a needle in my eye last week, they scratched something a little.  So then I had bleeding eyes.  The doctor gave me antibiotic drops and told me I had to stop taking any blood thinners, which basically means all the good pain killers.

So my eye was acting like it was infected on Monday, but it may have just been super cranky.  It has been stabbing me in the brain for the last several days and, let me tell you, Tylenol sucks.

I'm a little concerned that I might need to add neurologist to my list of specialists.  Migraines seem to be a thing I get now.  I'm hoping maybe they aren't, and that the headaches will stop after the surgery.  If not, well, neurologist.

So it's been a bad week.  There's been a lot of pain.  It has stopped me from going to work.  This, of course, frustrates me for all the reasons I've written about before.  It also kind of stresses me out because I don't really have any spare leave.  I don't know how much time I'll need after surgery to recover, but if it's much more than a week I'm going to be screwed.

I'm also worried about the surgery.  I'm worried that it won't work.  I mean, I'm worried it will cause as many new problems as it fixes old ones.  I have good reasons to think it won't really do that - the people going in and trying to fix me are probably the best in the state and they know what they're doing.  There are always side effects though.  It's probably not realistic to expect my nose to ever really function completely the way it's supposed to.  It's possible fixing my tear duct will lead to a lifetime of dry eyes or a bone ridge that will bother me as much as my little saddle nose.

I'm very consciously trying to not dwell on the worst case scenario.  In fact I'm working hard on positive imagery and self-hypnosis* because I do think there's something to be said for the power of positive thinking, hokey as it might seem.  I'm also trying to be realistic.  I don't want to set myself up for disappointment.

I started today with pain, and I am feeling kind of discouraged and useless and frustrated.  And then this popped up on my facebook feed:


This is a video about Josh Hanagarne, the world's strongest librarian.  He works for a different library system, but it's the same city.  I've met Josh.  He came to my book club when we read his book and tore a deck of cards in half.  I have friends who are actually friends with him.  He has tourette syndrome and it has in the past been very debilitating for him.

This one quote really struck a chord with me today:

I try to never go home because my tourettes is bad.  Because it’s always bad.  And no day is necessarily harder than the other.  And I could see myself saying 'oh it’s too much' and then I’d just never come back to work

That's been milling around in my head, and I think I may have been saying "oh it's too much" lately.  Maybe I need to suck it up and work through the pain and the discomfort.  On the other hand, my condition is different is not tourettes.  Sometimes it really is too much, and I can push myself to the point that I literally cannot function.  I think for me too much is something I have to pay attention to and be careful with.

Giving in to my condition is also something I need to be careful of.  I'm not sure that right now is the time to figure out what too much is going to mean to me.  I can try to figure it out, but I'll just have to figure it all out again in 27 days because surgery is going to change things.  Hopefully it will change things for the much better.

Anyway, if you have some positive energy to spare, send it my way.  I need to try to go in to work tomorrow (usually I have Thursdays off) so I don't have to use up my leave for this week of pain I've been having.

*So I've had some experience with self-hypnosis.  I did a whole bunch of it when I was 13 before I had back surgery to straighten up my spine and fuse it (yeah, that was a surgery.  This one I'm having next month is small potatoes) because scoliosis.  The operation went exceptionally well and I can't help but attribute at least some of that to the mental prep we did.  

Stick a Needle in My Eye

I saw the eye doctor today.  She's awesome.  So, let's talk about my eye for a while.  First, some vocabulary:

This is the nasolacrimal system. These are the eye parts we're dealing with

What you don't see in this picture is that the Lacrimal duct drains into the sinuses.  We already know that my sinuses are full of scarring.  My Lacrimal duct is too.  So what happens is all the stuff that would normal drain into my nose gets stuck in the Lacrimal sac.  I have this awesome party trick that no one ever wants to see: I can push on the corner of my eye (where the lacrimal sac hangs out) and a bunch of gross will ooze out in to my eye.  The resident who checked me out before the doc thought this was really interesting.

Almost all the gross that comes out of the lacrimal sac comes out of the upper canaliculus, which is unusual apparently.  The doctor was concerned that the lower canaliculus was also blocked, which would make things extra complicated.  To check this (squick warning) the doctor literally stuck a needle in the puncta and pushed it through to the lacrimal sac.  She also tried irrigating (the needle was at the end of a syringe of saline) the system - but it was pretty obvious that the lacrimal duct was completely blocked, and irrigating can actually make that inflammation worse.  She did irrigate my left eye, just to make sure everything was working. It is.

The good news is my canaliculus is not blocked.  The bad news was NEEDLES in my EYES!

By the way, having numb eyelids is a very strange feeling.

Also good news neither my vision nor my eye mobility has been effected.

So, I need surgery.  She's going to bypass the lacrimal duct altogether and just punch a hole in the side of the sac so it will drain directly into my sinuses.  She and Nose Doctor are going to do the surgeries together, so he will be able to make sure the scarring in my nose is cleared from the new opening.  Then she'll put in some silicon tubes (stents, really) that I'll get to keep in my eye for 12 weeks.  

In normal cases they would try to do all this by going into my nose and working out from there.  Unfortunately because my nose is so messed up, Eye Doctor is pretty sure that's going to be difficult.  So I will probably get a nice scar on my face.  She said that such scars usually heal really well.  I'm ok with a scar though.

Anyway, after having my eyes messed with for quite a long time (needles!), I got to go down the hall to the surgery coordinator.  As it turns out, Nose Doctor and Eye Doctor actually have very conflicting schedules.  They do, however, have a joint project/patient on July 26 already, so they both can have clear spot for my surgery as well that day.  Honestly, that's almost the worst time for me as far as what is going on at work and in life.  But I got the impression that I could either take that date or wait a very long time for them to both have an opening at the same time.  So I said yes.  

Hopefully Throat Doctor will be able to make it to the surgery party too.  I'll see next Wednesday. Maybe something will have gone spectacularly right for me, and my throat will be clear enough that he doesn't even need to get in there and dilate it.

Getting the Ball Rolling

I really like Nose Doctor.  He gets me.

I went to see him last week. He stuck a scope up my nose and had a look around.*  It looks better up there than it has in the past, and there are no super scary things, like pollups.  I think maybe it looked better because my appointment was first thing in the morning and I do a nasal rinse every morning when I get up.

He also poked at the bridge of my nose that I'm not super happy about.  He said my saddle-nose isn't really that bad at all.  He also mentioned that it's really hard to get a reconstructed nose to look quite right, and that's another thing I should keep in mind if/when I look into getting that fixed.

But I was there for the inside of my nose. Because it wasn't so crusty and yucky, he got a better look at what's really going on in there.  It's all stuff we kind of already knew because of the the CT scan I had way back at the beginning of this mess, but still.  There's a bunch of scarring messing things up and preventing proper drainage.  That is why my nose is messed up and why my tear duct is blocked off.

So he wants to do surgery.  By now he has consulted with my rheumatologist - to make sure I'm not going to GPA back any damage they clear up - and an Eye (but only the not-eyeball part; orbital) Doctor with whom I now have an appointment a week from Tuesday.

I brought up my biggest concern with him which is this:  My problem is scar tissue.  Going in and cutting things up usually causes scarring, so... by fixing the problem might we be making it worse?

He has the same concern, and explained what he could do to mitigate it.  But he agrees that it is a possibility.

Anyway, I feel very confident that he understands the rather complicated situation that is my face.  I feel like my nose is in very good hands.

When I go see the eye doctor, I will probably also schedule surgery.  When I made the appointment, the lady I talked to mentioned that they (being both Nose Doctor and Eye Doctor) were looking at a July date, although she didn't say which.  So that may be sooner than I really expected, which is good, I guess.  It will probably be really nice to consistently be able to breathe, which will hopefully be the result of the procedures.

*I wonder what inspires ENTs to go in to that field.  Is there anyone who, as a kid, was like "I want to look up people's noses all day! I love boogers!"  I'm sure that's not how it goes, but that thought amuses me.

Oh Dear

Friday was a bad day.

I woke up after about 8 1/2 hours of sleep feeling completely exhausted.  Like stupid tired.  My limbs felt like they weighed 50 lbs each, I could barely keep my eyes open, sentences began to fall about 5 words in because my brain just wasn't willing to chip in and help my mouth with words.  I did't go to work because I was pretty sure I would be dangerous behind the wheel.

I am familiar with this kind of tired, but I was very surprised to see it.  I've been doing really well lately, and fatigue hasn't really been a thing.  And, of course, it popped up at the worst possible time - I had a couple classes coming to the library on Friday for a tour.  So I'm frustrated about that.  I'm also not sure what this means to my overall health.

It could be that I just did too much on Thursday and used up all my energy reserves.  Even though I have been feeling pretty well, I'm still in the recovering from being very very sick.  Spoonie rules still apply.  Even if my disease isn't active (it's probably not), there's been a lot of damage to my system.  It takes time for all that to recover.  So even if I'm mostly better, I guess I still have definite limits and need to be careful to not over-do it.

I'm worried that I've been masking symptoms.  I'm actually very good at ignoring how tired I am and working though fatigue.  Not fatigue like I felt on Friday, but lesser fatigue.  If I've been ignoring lesser fatigue, it could have built up, and then one super busy and tiring day finally overloaded me and I lost functionality.

There could also be mental health factors at work.

Anyway, as soon as I decided I wasn't going to make it to work, I went back to bed for another 5 hours and spent the rest of the weekend taking it easy.  I'm feeling much better now, but I'm not sure how to interpret this event.

Do I cut back on the things I'm doing?  Should I just try paying more attention to my energy levels?  That would could be good or bad, because I'm just as good at creating psychosomatic symptoms as I am at ignoring real ones.  Should I go on as I have been and write it off as a one time thing unless it happens again?

Worrying about this is stressing me out.  And I don't like set-backs.  At this point I'm probably over-thinking it and making mountains of molehills. f

Choosing Joy

I mentioned before that I've decided to start running.  The reasons are many, but probably my biggest reason is that I have enough that's wrong with me, so I want to actively work on fixing what I can.  If I'm generally in shape, I can tell better when I'm sick (many of my symptoms can be written off as symptoms of just being out of shape).  So I'm starting to run*.  Running because it's good cardio and I can do it without having to go somewhere to work out.

Today I super did not want to run.  I'm on day 2 of my the first week of my training plan... for the 3rd time**.  I was sore and stiff this morning.  It's a bad nose day.  I haven't looked at Tumblr all weekend, so there's a lot of internet out there to distract me.

I made myself get out of the house and go anyway.  I reallly really want this to be a habit, a routine, something I just do without thinking about it, and the only way to make that happen is to just get out and do it.

About 3 minutes in to my warm-up walk, I realized that I had a running negative commentary going in my head: "I don't want to do this.  The sun is too bright. My legs hurt.  I'm tired. I really don't want to be doing this..." You get the picture.  That sort of self-talk is definitely not helpful, so I made up my mind to stop it.

Now, you might have noticed, as soon as you decide to not think about something, that something is all you can think about.  So that's not what I did.  I decided to shift my focus externally and actively look for good things and comment on them in my head.  The first thing I found was a lilac bush in full bloom; it was beautiful.  Then I noticed how green all the plants are.  And, you know what, it is actually a really beautiful, clear, sunny morning. Then Queen started playing through my headphones and suddenly I was running with a smile on my face and really enjoying myself.

I'm telling you this story because I think it really exemplifies the way I try to go through all my days.  Some days it's really hard to find things good things.  And some days looking for good things takes a lot of energy that I just don't have.  But I usually find if I just start, even with the tiniest thing (for example, when I was stuck at home with 0 energy feeling completely awful, I got a lot of quality cat time, so I would focus on the sweet Jinx kitten), the good things start to snowball and overwhelm the negative thoughts.

It works for everything.  If I've had a really super bad day, and I make a point of saying "ok, all those bad things happened, but what about the good things that happened too?"  And I actively go through my day and look for good things.  I've never had a day in my life when I didn't have at least one really good thing happen.

So, anyway, I may have been dealt a kind of shitty hand in life.  But everyone gets their share of bad stuff.  I have a lot of really wonderful things in my life too.  I choose to look for joy, and be joyful.  I may sound like a Halmark card, but it really works to make everything easier.  I can't control the bad things that life hands me, but I can control what I dwell on.

Here's a kitten for you to look at if you need a little joy in your day:

*when I say run at this point, I really mean mostly walk.  I'm following a super gentle couch-to-5k thing, so right now I'm running about 3 minutes each time, and walking 20+

** I started the program, and decided to do the first week twice, because it was hard, and I'm REALLY out of shape.  Halfway through the second time, I injured my knee - it was a baby injury, but I took several weeks off running (still did exercise... a lot of strength training and playing Just Dance) to fully let it heal because injury=bad.  Now I have new running shoes, and I'm starting over again.  I'm going to be psyched when I finally move on to week 2.

Fifth State of the Cassie Address

To put things short and simple: I've been doing pretty well.

Mostly.

That is, when I'd feeling well, I'm doing great.  When I'm not, I'm not.

What I mean is, I'm mostly doing really well.  I'm almost sure that as far as active GPA goes, I'm in the clear.  It's hard to tell, but I'm mostly clear of symptoms and my blood work looks good.

There's some damage though, and that's making things difficult.  The worst thing I'm dealing with right now is one infection after another after another.  Since the beginning of the year I've had 3 sinus infections, and one eye infection.  That's 4 infections is as many months.

I think now at this point my immune system should have recovered from all the immuno-suppressants we used to treat the GPA.  The Rituxan didn't actually kill my entire immune system, which is good.  Prednisone (my arch nemesis) does do a number on your immune system though.  It's been long enough since I took either that I think my system should be recovered.  I probably should have asked my doctor about that on Thursday when I saw him.

So I saw my doctor on Thursday.  He took some of my blood. It's all normal.  He thinks I'm doing well and is very optimistic about my condition.  I'll see him again in 3 months.

If I don't have the Big Bad Disease anymore, why am I sick so much?  Well, like I said, there's damage.  And I finally have new insurance, so I can see the Specialists and hopefully get the damage fixed.

Part of the problem is my nose is still seriously jacked up.  There is probably some damage to the mucus membrane of my nasal passages which is kind of the first line of defense against infection.  That's something that may or may not be improved with a minor procedure (still under anesthesia though) but might not actually be fixable.  I have to see Nose Doctor about that.

I also need to talk to Nose Doctor about my eye.  Specifically what I am fairly certain is a blocked tear duct.  The blockage could be an extension of my nose junk, or it could be something else.  Nose Doctor will most likely refer me to another specialist; my Rheumatologist thought it would probably be an eye doctor who is not a whole eye doctor, but just the bits of the eye that are not the eye ball.  If/when I see him, I'll refer to him as Eye Doctor for simplicity's sake.

I'm honestly a little amused by how specialized the specialists get.

In other news, I've decided to start running.  I used to run... 3 million years ago when I was in high school, before I got hit the first time with the Big Bad.  I didn't hate it.  I'm not sure I love running, but I've made it my exercise of choice for a lot of reasons: I don't have to go somewhere (like a gym) to do it, it doesn't use a lot of fancy equipment, and I can work toward a clear, definable goal (a sponsored 5k run).  Those are all things that make me far more likely to actually stick to it.  I'm only  a week into "training" and so far I'm not running very much. I found a really gentle 12 week couch-to-5k type plan, and I'm actually repeating week one.  So right now I'm doing 6 reps of a 30 second run followed by a 3 minute walk, 3 days a week.  It's not much, but it's a start, and I'm pretty proud of myself for doing it.

I think if I can whip my body and my lungs into better shape it will do two major things.  First, if I'm healthier in general, I'm less likely to be sick.  Second, if I can eliminate symptoms that come from being fat and out of shape, I can get a clearer picture of what damage/disease I'm dealing with.

I also just completed a Living Well with Chronic Conditions class.   I want to write about it, but I'll save that for another post.

All in all, I'm hanging in there and getting things done.  My life is getting back to normal... or maybe I'm getting used to my new normal.  I'm finding the balance between illness and life, and it feels pretty good.

I Miss Dancing

Anyone on Facebook probably knows about the memories or "on this day" thing, right?  You click on it and it shows you everything you posted on this day in years past.  It's kind of fun.  It makes me a little sad though because up until 5 or 4 years ago, 90% of what I posted had to do with dancing.

I loved dancing.

I still love dancing, but I haven't done it in a really long time.

I'm not talking about just dancing around the house while listening to music (I do that often) or going out to a club and shaking your booty to music.  The dancing I love and miss is Lindy-Hop and, to a slightly lesser extent Blues.

There was a time when I was dancing one or the other of those two styles of dance 3-4 nights a week.  I don't think I can put in to words what dancing meant to me.  It was so life affirming.  It was just... movement and music energy and magic.  It doesn't fit in to words.

Besides that, dancing was something I did entirely for myself.  I started dancing regularly after the end of a relationship that had lose my sense of self.  As part of getting myself back, I (bravely) went to a dance event alone and took the lesson and fell in love.

I pretty much stopped dancing when I started grad school; I just didn't have time. And of course, by the time I graduated, I couldn't really breathe.  The rest is pretty much recorded here on this blog.

Now that I'm feeling a little better, is it time to dance again?  There's a couple places I know of tonight that have blues jams.  I could go and listen to the music and dance.  I would probably have fun.

I can tell you right now that I wont go.

I still can't breathe, really.  I'm so out of shape.  I feel like I've lost my grace; I can't make my body move the way I want it to.  Plus today (and most of last week) I have tendonitis in my foot, so dancing would be really painful.  Also, if I go to a blues jam, it will go late and I'll get to bed late and then be tired tomorrow.

There's part of me that knows all this is just a list of lame excuses (except maybe the foot thing).  If I just went, I could at least dance the slow songs, and I would have fun.  But there's a very strong possibility that I will be incredibly disappointed.  It's going to be so hard to go back to dancing and not be as good as I used to be.

I need to lose some weight and build up some muscle and cardio strength before I'm going to feel comfortable showing my face at a dance.  I can let my longing for my dancing days do one of two things: it can make me wallow in sadness and nostalgia, or it can give me something to work toward.  I'm going to make it the latter.

I promise, I'm going to go dancing before the end of the year.